Monday, 16 February 2015

I vividly remember as a child the first major bereavement in
my life. The sudden death of my maternal grandmother came as a huge shock to my
whole family and left my mother utterly devastated. As a small child I had
little concept of what this grief and shock really meant, but I do clearly remember
my mother telling me that gran had always said that she, “Didn’t want to be a
burden on her daughters,” like her mother (my great grandmother) had been to her sisters (my great aunts), and that she
would at least be glad that her sudden death had ensured this.

I never thought much more about the issue of burden at the
time. What it really was and what it meant was of little interest to me then,
but it would come into much sharper focus in my teens and twenties as my dad
lived with dementia. Many people expressed their belief that my dad’s dementia
must have been a huge burden on my life and that of other family members, with
my peer group in particular finding the whole notion of having a parent with
dementia just too burdensome to contemplate.

At the time, as ‘friends’ dropped by the wayside, I remember
thinking that one day they may be walking in my shoes. Would it simply be the
case that as adults with their own life, job, partner and children of
their own, that their parent(s) would become a burden that they just didn’t
have the time and energy for? The whole concept of burden is incredibly
interesting, not least because technically we are a ‘burden’ to someone from
the moment we are born until the moment we die.

Looking at burden through that technical viewpoint would
mean that when we are born we are a ‘burden’ to our parents, because without
their care, which takes a considerable amount of time, effort and money over many years, we are unlikely to survive to even make it to adulthood.
We are a ‘burden’ to our teachers who must educate us, and we are a ‘burden’ to
any healthcare professional who is charged with helping us in the face of
serious illness or injury.

As young adults we often become very focused on our own
lives, and of making a ‘new’ life that moves us away from that model of our early
family existence and into being an independent entity. But we don’t stop being a ‘burden’
– technically if we have an employer they could consider us a ‘burden’ given
the rights and protection employees have under employment law. Likewise in our
private lives, any partner we may have could find domestic daily life with us
has elements of being ‘burdensome’. We may even become a ‘burden’ on the state
if we need financial or housing assistance - anyone can fall on hard
times.

In adulthood many of us also start to take on additional ‘burdens’
in the form of having children and beginning the whole cycle of ‘burden’ from a
different perspective. By the time our parents age, many people simply don’t
have the time or energy for another ‘burden’ in their life.

But what is this ‘burden’ exactly? Is it financial? Is it
emotional? Or, when related to someone older, or someone ill, is it about
confronting our own mortality? I suspect that for many people it is a mixture of
many facets. Yet interestingly, despite the effect my dad’s dementia had on my
life, I never saw my dad as a burden. In fact quite the opposite. I saw him as
someone to love and care for in much the same way that he had loved and
cared for me. It was a role reversal, but not a burden.

Of course not everyone views the concept of burden in the
same way. In two recent meetings I attended the word burden came up twice. In one
instance it was in relation to ‘carer burden’, a method of describing the
effects of being a carer to a person with dementia. The other example came in a
discussion about dementia, where a contributor suggested that if they were to
develop dementia they would like the option of euthanasia to make sure that they
didn’t become a burden to their family.

The point about euthanasia is too big for this blog post so
I will tackle it at a later date, but the overarching theme from both of these
references to burden is the perception that:

A) Caring for a person with dementia is a burden and

B) That the burden only ends when the person dies (and
potentially not even then, given the problems that can arise when you are no
longer a carer). This then leads into the thorny area of debating if we should
hasten the death of the person.

This is a familiar portrayal, and for some people these
feelings of burden are their reality – I wouldn’t seek to deny that at all. But
I believe we do people with dementia and those caring for them a huge
disservice if we only view a life with dementia, and a life caring for a person
with dementia, through this stark, dark portrayal of burden.

My experience, and I only speak for myself here, is that
rather than being a burden, my dad taught me more in the 31 years I had with him
than I suspect I will learn in the equivalent next 31. Dad gave me so much, and
showed me the way to use my life and his legacy to make a real and lasting
difference to the lives of others. So, not so much a burden as a joy.

When I talk now to the people in my life who I love the most,
and they (sometimes) express their desire to never become a burden to me, my
reply is that in my mind when you really love someone that love supersedes any
burden. For me, looking at a caring role in the context of love rather than
burden is an infinitely more meaningful portrayal.

Monday, 2 February 2015

Moving into a
new home is always stressful. I spent most of 2014 trying to move house, and I
can testify to why it is generally considered to be one of the most stressful
life events, alongside bereavement, divorce, major illness and losing your job.Fortunately, at
the end of our very protracted move was a lovely new home, and even unpacking
became strangely exciting – the thrill of finding new places to keep treasured
possessions. Some items had to be given to charity shops, but the vast majority
of the things that we have accumulated over the years came with us. From the day
we moved in we were able to close our front door to peace and quiet, our own
space, our own choices of food and entertainment and a life of domesticity that
is exactly how we want it to be.There is a another
kind of moving house, though, that is altogether different. A move that is more
traumatic than most and yet remains shrouded in stigma: moving into a care home.It’s the kind of
move that is often not of the person’s choosing (although sometimes it is),
where your personal ‘front door’ is just your bedroom door, where peace and
quiet and sometimes even privacy are at a premium, where you live in extremely
close proximity to numerous other people, and where complete personal choice
around food, entertainment and daily life isn’t the norm for everyone. Perhaps
even more significantly though, it is a move that doesn’t involve packing up
every item you have accumulated over the years, but instead forces you to
choose a select group of possessions – only as much as will fit into your
bedroom.As if the stress
of the move itself isn’t enough, a move into a care home often also brings with
it elements of those other most stressful life events for either the person or
their immediate family.

·Bereavement:
As I wrote about in my blog post ‘Decisions, decisions’, care homes are perceived by some people as being ‘God’s Waiting
Room’. I vividly remember in one of my dad’s care homes, a new resident
arriving on the morning when a much loved resident had just passed away after a
short illness. Although the new resident’s arrival had been planned for some time
and their room was in a different part of the home, there was something very
thought-provoking for that family: they were settling their loved one in as the
undertakers were arriving to collect the deceased. If nothing else, it reminds
you of the fragility of life.

·Divorce:
For some couples who have been together for most of their lives, the day one of
them needs to move into a care home and the other remains in the
family home is one of unspeakable heartbreak. In some ways it could be
considered even more upsetting than divorce because it is almost always a
decision forced upon the couple, where neither wants it to happen and in any
other circumstances neither would ever instigate it. No matter how many hours
you go on to spend in that care home with your partner, you no longer live
together: your bed at night and your
table for breakfast in the morning are now just for one.

·Major
illness: This is one of the main reasons a loved one moves into a care home,
and it is often the fact that that illness has progressed that makes the move
necessary, certainly in the case of a person who is living with dementia. For
many families this can also go back to the point about bereavement, with many
relatives feeling a huge sense of loss.

·Losing
your job: If you’ve been caring for a loved one who now needs specialist
residential care, or indeed you can no longer cope as a carer, your loved
one’s move into a care home - however much it may be needed - will permanently
alter your way of life. You effectively lose your job as their primary carer
overnight. For some people that may be a huge relief, but for many others it
can leave them with feelings of hopelessness, lack of purpose and huge anxiety
about how their loved one is being cared for in the care home.

Taking all of
that into account, it puts the stress of the average house move - however
stressful you think it is - into context. Moving into a care home isn’t just
about changing your physical environment and leaving behind many of the items
you have been surrounded with over the years; it also changes relationships
and has an emotional element to it that you only really appreciate once you
find yourself in that situation.

In many ways, I
had that emotional toll softened by the fact that for the 3 moves my dad had
into 3 different care homes over a 9 year period, each one meant a release from
hospital, which was an infinitely more impersonal, regimented and clinical
environment than any of those 3 care homes were. Had moving into a care home
meant dad walking out of the family home, getting into a car and us driving him
to a care home, it would have been far more emotionally difficult.

In my dad’s case
the first move into a residential care home was possibly the most upsetting for
him and for us – it came following a decision by dad’s care team that he couldn’t
return home from hospital as he was considered at that time to be a danger to
himself and others. The upset, however, was largely because of a fear of the
unknown. We certainly weren’t sorry he was leaving hospital, and neither was
dad.

The second move
came after another spell in hospital, only this time dad had been there 3 months
and lost half of his body weight. We just desperately wanted him to be in a
more homely environment and be properly fed – it may sound a very
basic aspiration but believe me, we were truly at our wits end with hospital
care. The third move came at a time when dad was near the end of his life, and
this time our desperation was for him not to die in hospital but instead to be somewhere
as close to a home from home as possible.

For anyone feeling
anxious about the impending move of a loved one into a care home, or indeed is
feeling the emotional fallout (particularly guilt) after such a move, this Facebook status update
from a lovely lady whose mum has just moved into a care home will hopefully
make you smile as much as it made me smile when I read it:

“Just
love the fact that I turn up to take mum out today and she tells me she can't
because her friends will miss her, and then tells me to go home because she's
busy”

About Me

I'm a campaigner and consultant, writer and blogger. My dad had vascular dementia for approximately the last 19 years of his life. I aim to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.